domingo, 3 de maio de 2015

The salty girls project is changing the face of cystic fibrosis



As an evolution from the "JUST BREATHE: Adults with Cystic Fibrosis" project, Salty Girls started off as a running joke, but has turned into a worldwide phenomenon. While I was doing the portrait project, I ended up photographing a disproportionate number of girls to guys (i'm still wondering what the real reason is for this). Most of the women involved were roughly between the ages of 20-40, typical for an adult with CF I guess. Then someone actually said one day, "This project is just turning out to be a bunch of hot chicks with CF".

Thus the idea of a second project dedicated to showing how beautiful those fighting CF truly are. I also saw a girl in the news who was a model, posing in her bikini with a colostomy bag as she has Crohn's Disease, and shortly after that the Canadian model with the skin disease vitiligo being interviewed by Tyra Banks. I just thought well, it's time for a model with CF! I know what these woman go through on a daily basis; everyday it's a struggle living with CF. And, to the uninformed, it is the invisible fatal disease.

Cue the "Salty Girls"Now with almost 60 women - and more to come -  this will be a revolutionary, game-changing book. These women are inspirational and fearless, and we want to show hope for those younger CFers.


The sweat test has been the “gold standard” for diagnosing cystic fibrosis (CF) for more than 50 years. The sweat test measures the amount of chloride in the sweat.

People with CF have more chloride (salt) in their sweat than someone who does not have CF. Cystic fibrosis is a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, mainly the lungs and pancreas.In cystic fibrosis, the CFTR chloride channel is defective, and does not allow chloride to be reabsorbed into sweat duct cells. Consequently, more sodium stays in the duct, and more chloride remains in the sweat. The concentration of chloride in sweat is therefore elevated in individuals with cystic fibrosis.

The concentration of sodium in sweat is also elevated in cystic fibrosis. Unlike CFTR chloride channels, sodium channels behave perfectly normally in cystic fibrosis. However, in order for the secretion to be electrically neutral, positively charged sodium cations remain in the sweat along with the negatively charged chloride anions. In this way, the chloride anions are said to "trap" the sodium cations.


"It took a huge amount of courage for me to be able to expose my body for Salty Girls. When I look at my body, all I see are my scars: from meconium ileus, transplant, chest tubes, g tubes, picc lines, to self-harm scars. I pick out every single thing I find wrong with my body, and compare it with other women's bodies. This led to countless of body image issues. At its worst, it would trigger depression. I grew up being made fun of the scar that is on my stomach. That scar is from the first of many surgeries when I was just under a year old. I was born really sick due to my CF with meconium ileus, and in my case, it was difficult to treat. This led to multiple surgeries & an iliostomy bag. I spent my first year at the hospital, fighting for life. Over the years, I have become insecure of my body to a fault. My stomach scar is the only scar that truly affects the way I view myself, and I think it is largely because I have faced insults while being marked with something that I have grown up with. And today, I take a stance… I will learn to appreciate, love, and nurture my body the way it should be. My body may be scarred due to all of the physical trauma I have had to endure with Cystic Fibrosis, BUT, it will never define 'ME' as a person. It will define my experiences and how it has shaped my perspective on MYSELF, and EVERYONE that is struggling. My scars tell a story of a triumph after every obstacle. My scars tell me that no matter the BS I've had to deal with in my life - I still manage to keep the fire in my spirit BURNING. That is enough to keep me going."


"To me, being one of the Salty Girls is a statement of confidence. It tends to be more difficult to be comfortable with your body as a female when you have lots of medical scarring and foreign objects implanted in you. I personally have had a major abdominal surgery, as well as three different port a caths placed in my chest. A port a cath is not something you see every day, and it looks kind of strange, sort of like a bottle cap has been implanted under your skin. It’s harder to accept oneself as attractive when the perfection you see portrayed every day is nowhere near what your medically scarred body looks like. Salty Girls helps those of us who don’t look “normally” attractive to embrace our bodies, scars and all, and feel good about ourselves."

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